B.C. family nearing finish in race to raise $2.8 million to treat baby's rare disease

8 August 2020 - Parents hope funds will pay for expensive therapy not approved in Canada for type 1 spinal muscular ...

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'I need something to move forward,' says Edmonton mom waiting for approval for son's life saving treatment

24 July 2020 - The family of a little boy in need of a $3 million treatment says they have ...

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'Heartbreaking': Alberta families describe waiting for life-changing drug to be made available in Canada

17 July 2020 - More families are hoping a one-time treatment option for a rare condition will be made available ...

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Clock ticking on Edmonton family's hope for $2.8 million drug treatment for toddler son

 3 July 2020 - Family hoping Alberta Health will pay for new drug that must be administered by mid-July. ...

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B.C. teen with rare disease wins fight to receive costly drug from province

19 May 2020 - Health ministry won't explain change of heart in granting Miles Ambridge treatment for spinal muscular atrophy. ...

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When a lottery 'wins' sick babies life-saving drugs

30 January 2020 - Eva was diagnosed with spinal muscular atrophy, a motor neuron disease, just a few weeks after ...

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B.C. funding decision on pricey drug leaves teen with rare disease facing 'scary' future

13 January 2020 - Miles Ambridge just misses cut-off age to access Spinraza, a potentially life-changing treatment. ...

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New CADTH process for cell and gene therapies

9 January 2020 - CADTH has undertaken an internal review of our processes for drugs and devices, and established a revised ...

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Canadian parents of babies with rare deadly disease look to Novartis treatment lottery

5 January 2020 - Canadian babies with a rare and often fatal muscle-wasting disease may soon have access to a ...

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Toronto parents of baby needing $2.8 million drug turn to Swiss drug maker's dose lottery as a last resort

31 December 2019 - Critics call on Ottawa to improve access to expensive drugs that treat rare diseases. ...

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Family asking for help to purchase 'the most expensive drug in the world'

1 December 2019 - Ricardo Batista is desperately hoping for a cure for SMA, for his daughter Eva. ...

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Revised process for cell and gene therapies

21 November 2019 - CADTH has undertaken an internal review and established a novel process for the review of cell and ...

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Canadian breakthrough that became the world's most expensive drug, then vanished, gets second chance

17 October 2019 - CBC story about how pharmaceutical industry abandoned gene therapy Glybera sparks NRC effort to re-invent it. ...

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Life-changing drug Spinraza still not covered for many Canadians with spinal muscular atrophy

4 July 2019 - For several hundred Canadians with spinal muscular atrophy, Spinraza is a drug that means the difference ...

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Ontario grants broader access to Spinraza (nusinersen) for patients living with spinal muscular atrophy

13 June 2019 - Ontario joins Saskatchewan and Quebec to give patients with spinal muscular atrophy broader access to Spinraza. ...

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